Motor impairments (e.g. difficulties with motor control, muscle tone) affect between 6-9% of children. These children are often diagnosed with conditions such as developmental coordination disorder or cerebral palsy. They experience significant difficulties in participating in everyday life and are at high risk of long-term health and social problems. Despite this high burden of disease, interventions to manage these problems have been subject to little systematic research.
Interventions for these children consist of 'therapeutic activities' (e.g. exercises) that aim to increase what the children do in their daily lives. The interventions are poorly defined, lack explicit hypotheses about why or how they might work, and have insufficient evidence to support their effectiveness. This research sought to identify:
- The 'key ingredients' of an effective intervention to increase participation in physical leisure pursuits and play in children with motor impairments.
- How these ingredients can be combined in a feasible and acceptable intervention.
Research in stroke and chronic pain has shown that incorporating behaviour change strategies (e.g. confidence-building techniques) into therapeutic interventions significantly improves what patients can do (i.e. activity) and actually do (i.e. participation). Carers have also been shown to have an important role, suggesting that effective interventions should systematically incorporate therapeutic, personal (e.g. child's confidence) and environmental (e.g. parents' beliefs) components.
This project drew on the WHO International Classification of Functioning, Disability and Health - a conceptual framework that integrates biomedical, personal and environmental perspectives on illness and health. The methodology was based on the MRC guidance for developing complex interventions. The project consisted of the following five steps, and studies within them.
1. Identify biomedical, personal and environmental factors proposed to predict children's participation in leisure pursuits and play: (i) a systematic review of parents’ views about children’s participation in life at home, school and in the community; (ii) a survey of children with motor impairments regarding their participation in physical play and leisure; (iii) a survey of parents’ beliefs about the same children’s participation in physical play and leisure; (iv) a survey of clinicians about their views of the same children’s difficulties (e.g. impairments and activity limitations); and (iv) an interview study with a sub-sample of the children.
2. Build a theoretical model of the key predictors of participation in physical play in children with motor impairments: a synthesis of the above evidence and existing theory and evidence.
3. Select therapeutic and behaviour change strategies to target the proposed predictors: (i) a systematic review of the ‘active ingredients’ and mechanisms of change in occupational therapy and physiotherapy interventions for children with motor impairments; and (ii) use of the behaviour change matrix (Michie et al 2008) to select behaviour change techniques.
4. Operationalise the strategies in a feasible and acceptable intervention: a collaborative study with children, families and service providers.
5. Investigate the feasibility of using the intervention in practice, and model the intervention processes and outcomes: three mixed-methods interrupted-time-series single-case studies with children with motor impairments and with their families.
The primary output was a detailed protocol for an intervention based on empirical evidence and a theoretical model of disability in terms of behaviour (i.e. what children actually do). The intervention, if subsequently found to be effective, will support children with motor difficulties in attaining life-long well-being and participation in society. The project has also provided an exemplar for the development of further rehabilitation interventions.
The project was funded by MRC through a Population Health Scientist Fellowship.
Niina Kolehmainen – email@example.com
Collaborators: the Project
Jill Francis, City University, London
Craig Ramsay, Health Services Research Unit, University of Aberdeen
Lorna McKee, Health Services Research Unit, University of Aberdeen
Marjolijn Ketelaar, Rehabilitation Centre de Hoogstraat, Utrecht, Netherlands
Jennifer McAnuff, NHS Leeds Community Health Care
Christine Owen, Children’s Occupational Therapy, NHS Lothian
Collaborators: Specific Studies within the Project
NHS organisations in Fife, Forth Valley, Glasgow, Lanarkshire, Leeds, Mid-Yorkshire
Cynthia Fraser, Health Services Research Unit, University of Aberdeen
Maureen Bult, Rehabilitation Centre de Hoogstraat, Utrecht, Netherlands
Peter Rosenbaum,CanChild Centre of Childhood Disability Research, McMaster University
Cheryl Missiuna, CanChild Centre of Childhood Disability Research, McMaster University
Briano Di Rezze, CanChild Centre of Childhood Disability Research, McMaster University
Annemarie Tissen, Netherlands
Advisors: The Project
Mark Davidson (parent perspective)
Children with motor impairments (an advisory group)
Heather Angilley (clinician perspective – physiotherapy)
Allan Colver (clinical academic perspective)
Marie Johnston (behaviour change perspective)
Kolehmainen N, Francis JJ, Ramsay CR, Owen C, McKee L, Ketelaar M, Rosenbaum P. Participation in physical play and leisure: developing a theory- and evidence-based intervention for children with motor impairments. BMC Pediatrics 2011 11:100doi:10.1186/1471-2431-11-100
Kolehmainen N, Ramsay C, Owen C, Missiuna C, McKee L, Francis J. Participation in physical play and leisure in children with motor impairments: a mixed methods study to generate evidence for intervention development. Physical Therapy Journal. 2015,95(10):1374-86. doi: 10.2522/ptj.20140404.
Powrie B, Kolehmainen N, Turpin M, Copley J, Ziviani J. The meaning of leisure for children and young people with disabilities: a systematic evidence synthesis of qualitative studies. Developmental Medicine & Child Neurology. 2015, 57(11):993-1010. doi: 10.1111/dmcn.12788.
Shikako-Thomas K, Kolehmainen N, Ketelaar M, Bult M, Law M. Promoting leisure participation as part of health and well-being in children and youth with cerebral palsy. Journal of Child Neurology. 2014 29(8):1125-1133. doi:10.1177/0883073814533422.
Kolehmainen N, Missiuna C, Owen C. Eliciting beliefs about physical activity from young children with motor impairments using qualitative multi-methods
Kolehmainen N, Johnston M. ‘Participation’ as a health outcome: using ‘Goal hierarchy’ to advance measurement and interventions.
Kolehmainen N, Bult M, Boeije H, Fraser C, Ketelaar M. Parents’ views about children’s participation in leisure: a systematic evidence synthesis using the Theoretical Domains Framework.
Kolehmainen N, Tissen-Budde A, McAnuff J. Reporting of ingredients, mechanisms and outcomes in paediatric rehabilitation research: a systematic review.